Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

New Diagnosis.Mad at myself f/not seeing it sooner

I am a new member, diagnosed (kind of) a couple months ago and just need to vent. Until about a year ago, I didn't know what PKD was and I should have. I've been helping take care of a mid 80's aged parent who is in stage 5 and on dialysis. She wasn't diagnosed with CKD until her GFR was around 15%. When we asked her Doctors what caused the failure they said it didn't matter at that point and just started treating her. She had been diagnosed with cysts in the early 2000's and had them drained on a couple of occasions. No one ever mentioned PKD, just treated them as simple cysts.

I've always had a little bit of a belly but around 5-8 years ago it started expanding. I talked to my primary care physician and he would just say "try a low fat diet"... Then I got a hernia he said "We'll watch it, if it starts to cause pain we will do something". Then I got a distended stomach, same answer. i'm trying to lose weight but the belly just wouldn't go away. Finally, tragically my Dr was killed in an accident and I got another physician two years ago. I asked him about my abdomen and he sent me out for an ultrasound and found that I had large cysts on my kidneys. He sent me to a Urologist who told me that half the men over 50 have renal cysts and if it wasn't bothering me to not worry and follow up in 6 months(he even explained simple and polycystic cysts and assured me they were simple). He left the practice and I never followed up with anyone else because it didn't hurt. The following year when I went to my primary for my yearly physical he asked about it and I told him what the urologist told me and that I didn't follow up after he left the practice. My primary thought I should follow up so he had be get another ultrasound which had similar readings (largest now 16 cm) so he sent me to another Urologist. This Urologist immediately said it was probably polycystic and referred me to a nephrologist who agreed with him that it was probably PKD. The nephrologist hadn't seen the actual ultrasounds so he told me to drink lots of water, quit drinking caffeine and come back in 3 months. Since then I had them check my mother and now they think may have PKD as well.

I didn't mention that they showed a couple cysts on my liver as well so I believe that i could have PLD as well (my abdomen is huge) but no one has addressed that yet. In the mean time, I'm reading all I can and am trying not to panic. I consider myself lucky because I don't have any pain most of the time, every once in a while I'll get pain under my rib. I keep wondering if I could have slowed this down if I had known 8 or 9 years ago instead of just finding out.

A couple questions, can you reduce the size of your abdomen by draining the cysts? I feel like I'm going to pop sometimes. Also, do they typically test for the gene to verify the diagnosis or do they just do it from the ultrasound.

Hi there,
Welcome to the group. From reading your post, it certainly seems that you have PKD, inherited from your mother. She has done well to reach 85 and still have 15% function. You don’t say what your eGfr is. Has this been checked? It may well be that you have PKD 2, given your mother’s late need for dialysis. This tends to be milder and present symptoms later in life.

In answer to your question about draining cysts, it’s usually not recommended. They tend to fill up again so it is only a very short term solution. Diagnosis is usually based on ultrasound alone. If you have more than a couple of cysts on both kidneys it gives a positive diagnosis.

Liver cysts are quite common with PKD and rarely cause a problem. My liver, unusually, is filled with cysts and is enormous, along with my huge kidneys. No tissue is spared at all.

There’s no point wondering now about what you might have done differently with an earlier diagnosis. Concentrate on what you can have an effect on by making healthy choices, drinking plenty of water, avoiding caffeine and NSAIDs and only having alcohol in moderation. It’s important to keep an eye on your blood pressure and make sure it doesn’t go high, as this can cause further kidney damage. Keeping sodium intake low will help.

Thank you,
I have a f/u appt with the Neph in a couple weeks, I've been trying to drink 3L of water a day, other than that, all I do is avoid caffeine. Hopefully my labs will be stable, Thanks again for your input,

Been awhile. This new format, well, I just tried to post and then it went so I don't know what happened to it.Back into the dark as I call it. I've been doing so good these last four years with the PKD. Unfortunately hit my head on my cupboard door, got rear ended, flew with permission of my doctor and came back drooling, couldn't talk, couldn't draw a rectangle and other objects try as I...

Hi every body I am new. I am in PKD stage 4 I feel tried alot. I need to know how to get some energy?

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